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Objective: To review quality of care in births planned in midwifery-led settings, resulting in an intrapartum-related perinatal death.Design: Confidential enquiry.Setting: England, Scotland and Wales.Sample: Intrapartum stillbirths and intrapartum-related neonatal deaths in births planned in alongside midwifery units, freestanding midwifery units or at home, sampled from national perinatal surveillance data for 2015/16 (alongside midwifery units) and 2013-16 (freestanding midwifery units and home births).Methods: Multidisciplinary panels reviewed medical notes for each death, assessing and grading quality of care by consensus, with reference to national standards and guidance. Data were analysed using thematic analysis and descriptive statistics.Results: Sixty-four deaths were reviewed, 30 stillbirths and 34 neonatal deaths. At the start of labour care, 23 women were planning birth in an alongside midwifery unit, 26 in a freestanding midwifery unit and 15 at home. In 75% of deaths, improvements in care were identified that may have made a difference to the outcome for the baby. Improvements in care were identified that may have made a difference to the mother's physical and psychological health and wellbeing in 75% of deaths. Issues with care were identified around risk assessment and decisions about planning place of birth, intermittent auscultation, transfer during labour, resuscitation and neonatal transfer, follow up and local review.Conclusions: These confidential enquiry findings do not address the overall safety of midwifery-led settings for healthy women with straightforward pregnancies, but suggest areas where the safety of care can be improved. Maternity services should review their care with respect to our recommendations.Tweetable Abstract: Confidential enquiry of intrapartum-related baby deaths highlights areas where care in midwifery-led settings can be made even safer. [ABSTRACT FROM AUTHOR]

Objective: We sought to determine the economic costs associated with moderate and late preterm birth.Design: An economic study was nested within a prospective cohort study.Sample: Infants born between 32(+0) and 36(+6)  weeks of gestation in the East Midlands of England. A sample of infants born at ≥37 weeks of gestation acted as controls.Methods: Data on resource use, estimated from a National Health Service (NHS) and personal social services perspective, and separately from a societal perspective, were collected between birth and 24 months corrected age (or death), and valued in pounds sterling, at 2010-11 prices. Descriptive statistics and multivariable analyses were used to estimate the relationship between gestational age at birth and economic costs.Main Outcome Measures: Cumulative resource use and economic costs over the first two years of life.Results: Of all eligible births, 1146 (83%) preterm and 1258 (79%) term infants were recruited. Mean (standard error) total societal costs from birth to 24 months were £12 037 (£1114) and £5823 (£1232) for children born moderately preterm (32(+0) -33(+6)  weeks of gestation) and late preterm (34(+0) -36(+6)  weeks of gestation), respectively, compared with £2056 (£132) for children born at term. The mean societal cost difference between moderate and late preterm and term infants was £4657 (bootstrap 95% confidence interval, 95% CI £2513-6803; P < 0.001). Multivariable regressions revealed that, after controlling for clinical and sociodemographic characteristics, moderate and late preterm birth increased societal costs by £7583 (£874) and £1963 (£337), respectively, compared with birth at full term.Conclusions: Moderate and late preterm birth is associated with significantly increased economic costs over the first 2 years of life. Our economic estimates can be used to inform budgetary and service planning by clinical decision-makers, and economic evaluations of interventions aimed at preventing moderate and late preterm birth or alleviating its adverse consequences.Tweetable Abstract: Moderate and late preterm birth is associated with increased economic costs over the first 2 years of life. [ABSTRACT FROM AUTHOR]

Established in 1952, the programme of surveillance and Confidential Enquiries into Maternal Deaths in the UK is the longest running such programme worldwide. Although more recently instituted, surveillance and confidential enquiries into perinatal deaths are also now well established nationally. Recent changes to funding and commissioning of the Enquiries have enabled both a reinvigoration of the processes and improvements to the methodology with an increased frequency of future reporting. Close engagement with stakeholders and a regulator requirement for doctors to participate have both supported the impetus for involvement of all professionals leading to greater potential for improved quality of care for women and babies. [ABSTRACT FROM AUTHOR]

Objective: To investigate whether light drinking in pregnancy is associated with adverse child mental health and academic outcomes.Design: Using data from the prospective, population-based Avon Longitudinal Study of Parents and Children (ALSPAC), we investigated the associations between light drinking in pregnancy (<1 glass per week in the first trimester) and child mental health (using both parent and teacher rated Strengths and Difficulties Questionnaires (SDQs)) and academic outcomes based on Key Stage 2 examination results at age 11 years.Participants: 11-year-old children from ALSPAC with parent (n=6587) and teacher (n=6393) completed SDQs and data from Key Stage 2 examination results (n=10 558).Results: 39% of women had consumed <1 glass per week and 16% ≥1 glass per week of alcohol during the first trimester (45% abstaining). After adjustment, relative to abstainers, there was no effect of light drinking on teacher-rated SDQ scores or examination results. In girls, although there was a suggestion of worse outcomes (adjusted regression coefficient=0.38; 95% CI 0.01 to 0.74) on the parent-rated total SDQ score in those exposed to light drinking compared to abstainers, no dose-response relationship was evident.Conclusions: Although the pattern of findings involving parent ratings for girls exposed to light drinking is consistent with earlier findings from this cohort, the overall lack of any adverse effects of light drinking is similar to findings from other recent cohort studies. Light drinking in pregnancy does not appear to be associated with clinically important adverse effects for mental health and academic outcomes at the age of 11 years. [ABSTRACT FROM AUTHOR]

Background: The birth prevalence of gastroschisis is increasing worldwide, yet little evidence exists concerning the optimal monitoring strategies after diagnosis. The aim of this study was to describe the U.K. prevalence, antenatal management and outcomes of affected pregnancies.Methods: Cases were identified throughout the U.K. between October 2006 and September 2007, using three different sources.Results: The overall birth prevalence of gastroschisis was 4.2 cases per 10, 000 total births (95% CI 3.6-4.8). Infants were variably monitored with growth scans (90%), umbilical artery Doppler ultrasound (85%), cardiotocography (65%) and biophysical profile (27%). Bowel measurements were undertaken for only 113 infants (52%). Eighty-nine women (43%) were induced and 63 (31%) laboured spontaneously. Eleven women (5%) had an elective caesarean delivery where the sole indication was fetal gastroschisis.Conclusions: The variability in management and paucity of evidence on antenatal monitoring approaches suggests there may be a place for randomised trials of fetal surveillance strategies in order to develop the evidence to improve outcomes for the at-risk fetus with gastroschisis. This study suggests that case ascertainment by regional congenital anomaly registers is high; extension of the coverage of these registers to the entire cohort of U.K. births would facilitate ongoing surveillance and research. [ABSTRACT FROM AUTHOR]

Objective: To review all late terminations of pregnancy, between 22(+0) and 26(+6) weeks of gestation, collected as part of the EPICure2 study.Design: Prospective cohort study.Setting: All National Health Service (NHS) hospitals providing perinatal services for extremely preterm infants.Population: All births between 22(+0) and 26(+6) weeks of gestation in England during 2006.Methods: Data were collected for the defined cohort of births, including terminations of pregnancy, by designated unit staff using a standardised questionnaire. Rigorous validation processes were established to ensure comprehensive data collection. Gestational age was validated using a hierarchical classification of scan dates, certain date of last menstrual period and working gestation. Data for terminations of pregnancy (TOPs) were categorised into two groups, terminations for fetal abnormality and for maternal or fetal compromise, and were analysed in terms of their reporting, management and outcomes.Main Outcome Measures: Classification, rate of feticide and outcome following TOP.Results: Of 3782 births between 22(+0) and 26(+6) weeks of gestation, 647 (17.1%) were TOPs; of these 584 (90.3%) were for fetal abnormality and 63 (9.7%) for maternal or fetal compromise. Feticide was carried out in 489 of 584 (83.7%) TOPs for fetal abnormality, and in 38 of 63 (60.3%) of the TOPs for maternal or fetal compromise. Live births resulted following 2.2% TOPs for fetal abnormality and 4.8% TOPs for maternal or fetal compromise.Conclusion: Terminations of pregnancy represent a relatively large proportion of very preterm births. Fetal abnormalities are the main cause for these terminations, and most include feticide. Better screening strategies are required to avoid the need for late terminations of pregnancy for fetal abnormalities. [ABSTRACT FROM AUTHOR]

Please cite this paper as: Draper E, Alfirevic Z, Stacey F, Hennessy E, Costeloe K, for the EPICure Study Group. An investigation into the reporting and management of late terminations of pregnancy (between 22+0 and 26+6 weeks of gestation) within NHS Hospitals in England in 2006: the EPICure preterm cohort study. BJOG 2012;119:710-715. Objective To review all late terminations of pregnancy, between 22+0 and 26+6 weeks of gestation, collected as part of the EPICure2 study. Design Prospective cohort study. Setting All National Health Service (NHS) hospitals providing perinatal services for extremely preterm infants. Population All births between 22+0 and 26+6 weeks of gestation in England during 2006. Methods Data were collected for the defined cohort of births, including terminations of pregnancy, by designated unit staff using a standardised questionnaire. Rigorous validation processes were established to ensure comprehensive data collection. Gestational age was validated using a hierarchical classification of scan dates, certain date of last menstrual period and working gestation. Data for terminations of pregnancy (TOPs) were categorised into two groups, terminations for fetal abnormality and for maternal or fetal compromise, and were analysed in terms of their reporting, management and outcomes. Main outcome measures Classification, rate of feticide and outcome following TOP. Results Of 3782 births between 22+0 and 26+6 weeks of gestation, 647 (17.1%) were TOPs; of these 584 (90.3%) were for fetal abnormality and 63 (9.7%) for maternal or fetal compromise. Feticide was carried out in 489 of 584 (83.7%) TOPs for fetal abnormality, and in 38 of 63 (60.3%) of the TOPs for maternal or fetal compromise. Live births resulted following 2.2% TOPs for fetal abnormality and 4.8% TOPs for maternal or fetal compromise. Conclusion Terminations of pregnancy represent a relatively large proportion of very preterm births. Fetal abnormalities are the main cause for these terminations, and most include feticide. Better screening strategies are required to avoid the need for late terminations of pregnancy for fetal abnormalities. [ABSTRACT FROM AUTHOR]

OBJECTIVE: The purpose of this work was to investigate the incidence rate for admission and mortality of children receiving paediatric intensive care in relation to socioeconomic status and ethnicity in England and Wales. DESIGN: National cohort of sequential hospital admissions. SETTING: Twenty nine paediatric intensive care units in England and Wales. PARTICIPANTS: All children aged under 16 years admitted to paediatric intensive care in the 4 years 2004-2007. MAIN OUTCOME MEASURES: Incidence rates for admission and odds ratios (OR) for risk-adjusted mortality by an area based measure of deprivation (Townsend score) and ethnic group (south Asian vs non-south Asian determined using two-name analysis algorithms). RESULTS: The incidence for south Asian children was higher than that of non-south Asian children (138 vs 95/100,000, incidence rate ratio 1.36, 95% CI 1.32 to 1.40). The age-sex standardised incidence for children admitted to paediatric intensive care ranged from 69/100,000 in the least deprived fifth of the population to 124/100,000 in the most deprived fifth. The risk-adjusted OR for mortality for south Asian children was 1.36 (95% CI 1.18 to 1.57) overall, rising to 2.40 (95% CI 1.40 to 4.10) in the least deprived fifth of the population when a statistical interaction term for deprivation was included. CONCLUSIONS: In England and Wales, the admission rate to paediatric intensive care is higher for children from more deprived areas and 36% higher for children from the south Asian population. Risk-adjusted mortality increases in south Asian children as deprivation decreases. [ABSTRACT FROM AUTHOR]

Aims. To provide an overview of the literature relating to the principles, policy and practice of extended nursing roles in UK intensive care settings to date; to review and critically assess evidence of impact, outcomes and effect on practice and provide suggestions for future research. Background. It is known that career development opportunities, new technologies, patient needs, as well as the reduction in junior doctors' hours, are driving the development of new roles for nurses. Policy initiatives aim to expand nursing roles to support professional substitution. In adult, neonatal and paediatric intensive care, specialist trained nurses and designated advanced nursing practitioners are increasingly taking on extended practice of clinical tasks previously undertaken by medical staff. As yet there are no statutory regulations on the perceived scope and definition of the role of extended and advanced roles. Design. Systematic review. Methods. Search of electronic databases and selection of policy and peer-reviewed reports and reviews of extended nursing roles or advanced nursing practitioners in UK intensive care settings. Results. Chronological review shows policy development proceeding in a relatively ad hoc way. There is limited information available about how extensively or effectively extended nursing roles are being implemented in intensive care settings in the UK, particularly in adult and paediatric intensive care. To test local initiative findings for reliability and generalisability, a more robust evidence base is required. Conclusions. More data are needed on definition and outcomes of extended nursing roles in intensive care and care process measures should be developed to better inform implementation of nurse role development in the UK. Relevance to clinical practice. The review of policy and research evidence in this paper may better inform clinicians working in adult, neonatal or paediatric intensive care, as they continue to be challenged by expansion and development of their role. It may also help to form a basis and evaluation for future research into extended and advanced nursing roles in intensive care settings. [ABSTRACT FROM AUTHOR]

Objective: To explore the relationship between infection and socioeconomic deprivation among mothers of spontaneous very preterm infants to contribute to the understanding of the deprivation gap in the incidence of very preterm birth. Methods: We used comprehensive data from a large retrospective study of very preterm birth in a U. K. health region (representing approximately 1 in 12 U.K. births) between 1994 and 2005. We report the relationship between fetal or maternal infection before birth and deprivation quintile of all singleton live births at 22 0/7 to 32 6/7 weeks of gestation associated with spontaneous onset of labor. Results: Overall, 24% of the 4,987 spontaneous very preterm singleton births had recorded evidence of maternal or fetal infection. Rates of infection increased significantly with increasing deprivation. Spontaneous very preterm births to mothers from the most deprived quintile were at 43% increased odds of being associated with infection compared with those from the least deprived quintile (odds ratio 1.43, 95% confidence interval 1.13-1.80) after adjusting for gestation, year of birth, and mother's age. Conclusion: Spontaneous very preterm births to mothers from more deprived areas are more likely to be associated with infection before birth. Level Of Evidence: II. [ABSTRACT FROM AUTHOR]

This study explored the psychosocial factors underpinning maternal smoking. Interviews with 40 pregnant smokers attending antenatal clinics at Leicester Royal Infirmary, NHS Trust, UK were recorded and transcribed. Respondents specified four factors working against their quitting: other smokers, lack of will-power, dependence and negative affect. While aware of the health risks, half said they were not worried about these risks, citing previous uncomplicated pregnancies experienced by themselves and others. Nearly all had partners who smoked, which for many was a disincentive to quit. Respondents were asked what information they had received and what they thought would be useful. They were sceptical about the usefulness of leaflets but thought that videos may be effective. Half were surprised at how little their smoking was mentioned in their antenatal consultations. The implications for antenatal care are discussed. [ABSTRACT FROM AUTHOR]

Objectives: To provide survival data and rates of severe disability at 2 years of corrected age in infants born prior to 26 weeks' gestation in 2001-2003 and to compare these outcomes with an earlier cohort from 1991 to 1993.Design: Population-based prospective cohort study.Setting: Former Trent region of UK covering a population of approximately five million and around 55 000 births per annum.Participants: The authors identified a 3-year cohort of infants born before 26 weeks' gestation between 1 January 2001 and 31 December 2003 from The Neonatal Survey (TNS). Questionnaires based on the Oxford minimum dataset were completed.Main Outcome Measures: Survival, service use and disability levels were compared between the 2001- 2003 cohort and the cohort from 1991 to 1993.Results: In 2001-2003, 0%, 18% and 35% of live born babies were alive at 2 years without any evidence of severe disability at 23, 24 and 25 weeks' gestation, respectively. Overall, of those children admitted to neonatal care, the proportion with no evidence of severe disability at 2 years corrected age improved from 14.5% in 1991-1993 to 26.5% in 2001-2003. There was an increase in the proportion of children with at least one severe disability, out of total admissions to neonatal unit (8% vs 17%) and of those assessed at 2 years (35% vs 39%).Conclusions: This study has shown an improvement in survival to discharge in babies admitted for neonatal care. However, this improved survival has been associated with an increase in the proportion of children with at least one severe disability at a corrected age of 2 years. [ABSTRACT FROM AUTHOR]

Objective: To investigate the variation in the survival rate and the mortality rates for very preterm infants across Europe.Design: A prospective birth cohort of very preterm infants for 10 geographically defined European regions during 2003, followed to discharge home from hospital.Participants: All deliveries from 22 + 0 to 31 + 6 weeks' gestation.Main Outcome Measure: All outcomes of pregnancy by gestational age group, including termination of pregnancy for congenital anomalies and other reasons, antepartum stillbirth, intrapartum stillbirth, labour ward death, death after admission to a neonatal intensive care unit (NICU) and survival to discharge.Results: Overall the proportion of this very preterm cohort who survived to discharge from neonatal care was 89.5%, varying from 93.2% to 74.8% across the regions. Less than 2% of infants <24 weeks' gestation and approximately half of the infants from 24 to 27 weeks' gestation survived to discharge home from the NICU. However large variations were seen in the timing of the deaths by region. Among all fetuses alive at onset of labour of 24-27 weeks' gestation, between 84.0% and 98.9% were born alive and between 64.6% and 97.8% were admitted to the NICU. For babies <24 weeks' gestation, between 0% and 79.6% of babies alive at onset of labour were admitted to neonatal intensive care.Conclusions: There are wide variations in the survival rates to discharge from neonatal intensive care for very preterm deliveries and in the timing of death across the MOSAIC regions. In order to directly compare international statistics for mortality in very preterm infants, data collection needs to be standardised. We believe that the standard point of comparison should be using all those infants alive at the onset of labour as the denominator for comparisons of mortality rates for very preterm infants analysing the cohort by gestational age band. [ABSTRACT FROM AUTHOR]

OBJECTIVES: Advances in perinatal medicine increased survival after very preterm birth in all countries, but comparative population-based data on these births are not readily available. This analysis contrasts the rates and short-term outcome of live births before 32 weeks of gestation in 10 European regions. METHODS: The Models of Organizing Access to Intensive Care for Very Preterm Births (MOSAIC) study collected prospective data on all very preterm births in 10 European regions covering 494,463 total live births in 2003. The analysis sample was live births between 24 and 31 weeks of gestation without lethal congenital anomalies (N = 4908). Outcomes were rates of preterm birth, in-hospital mortality, intraventricular hemorrhage grades III and IV or cystic periventricular leukomalacia and bronchopulmonary dysplasia. Mortality and morbidity rates were standardized for gestational age and gender. RESULTS: Live births between 24 and 31 weeks of gestation were 9.9 per 1000 total live births with a range from 7.6 to 13.0 in the MOSAIC regions. Standardized mortality was doubled in high versus low mortality regions (18%-20% vs 7%-9%) and differed for infants < or = 28 weeks of gestation as well as 28 to 31 weeks of gestation. Morbidity among survivors also varied (intraventricular hemorrhage/periventricular leukomalacia ranged from 2.6% to < or = 10% and bronchopulmonary dysplasia from 10.5% to 21.5%) but differed from mortality rankings. A total of 85.2 very preterm infants per 10,000 total live births were discharged from the hospital alive with a range from 64.1 to 117.1; the range was 10 to 31 per 10,000 live births for infants discharged with a diagnosis of neurologic or respiratory morbidity. CONCLUSIONS: Very preterm mortality and morbidity differed between European regions, raising questions about variability in treatment provided to these infants. Comparative follow-up studies are necessary to evaluate the impact of these differences on rates of cerebral palsy and other disabilities associated with preterm birth. [ABSTRACT FROM AUTHOR]

Objectives: To assess the quality of care and timing of possible asphyxial events for infants with neonatal encephalopathy; to compare the quality of care findings with those relating to the deaths from the Confidential Enquiry into Stillbirths and Deaths in Infancy (CESDI); and to assess whether the confidential enquiry method is a useful clinical governance tool for investigating morbidity.Design: Independent, anonymised, multidisciplinary case reviews.Setting: Trent Health Region, UK.Patients: All cases of grade II and III neonatal encephalopathy born in 1997, excluding those due to congenital malformation, inborn error of metabolism, or infection. All CESDI deaths thought to have resulted from intrapartum asphyxia in 1996 and 1997.Main Measures: Quality of care provided, timing of possible asphyxial episodes, and the source and timing of episodes of suboptimal care.Results: Significant or major episodes of suboptimal care were identified for 64% of the encephalopathy cases and 75% of the deaths. An average of 2.8 and 2.5 episodes of suboptimal care were identified for the deaths and encephalopathy cases respectively. Over 90% of episodes involved the care provided by health professionals. Results were fed directly back to the units concerned on request and changes in practice have been reported.Conclusions: The findings were very similar for the encephalopathy cases and the deaths. We have demonstrated that with minor adaptations the CESDI process can be applied to serious cases of morbidity. However, explicit quality standards, control data, and a more formal mechanism for the implementation of findings would strengthen the confidential enquiry process as part of clinical governance. [ABSTRACT FROM AUTHOR]

Background: Previous studies comparing different models of neonatal intensive care have generally not been population based. The objective of this study was to compare the perinatal services of two total populations.Methods: Observational study based on two geographically defined populations: the whole of Demark (some centralisation of neonatal intensive care but most delivered locally by small perinatal centres-48 in total) and the Trent Health Region of the UK (no formal centralisation however deliveries almost all focussed on 16 major hospitals with > 90% of the intensive care provided by 13 hospitals). Information was recorded about the course of every liveborn infant < 28 weeks gestation and or < 1000g birth weight and > or = 21 weeks gestation in 1994 and 1995.Results: Despite having a smaller population the number of liveborn children meeting the study criteria was significantly higher in Trent (Demark 461 (3.3 per 1000 births, 95% confidence interval (CI) 3.0 to 3.6); Trent 572 (4.9 per 1000 births, 95% CI 4.5 to 5.3)). In Denmark 91.1% of these infants were admitted for intensive care and 85.5% in Trent. Despite significantly more Trent infants being exposed to antenatal steroids their outcome was worse (median Clinical Risk Index for Babies (CRIB) score 7 v 4; proportion receiving ventilation 87.6% v 40.0%; survival to discharge (uncorrected for disease severity) 42.3% v 35.0%).Conclusion: The population characteristics of Trent seemed to produce a higher prematurity rate compared to Denmark. These infants as a group appeared sicker and, despite more intensive care delivered by a more specialised service, outcomes were worse. [ABSTRACT FROM AUTHOR]

Objective: To determine changes in the incidence of chronic lung disease of prematurity between 1987, 1992, and 1997.Methods: Observational study based on data derived from a geographically defined population: Trent Health Region, United Kingdom. Three time periods were compared: 1 February 1987 to 31 January 1988 (referred to as 1987); 1 April 1992 to 31 March 1993 (referred to as 1992); 1997. All infants of < or = 32 completed weeks gestation born to Trent resident mothers within the study periods and admitted to a neonatal unit were included. Rates of chronic lung disease were determined using two definitions: (a) infants who remained dependent on active respiratory support or increased oxygen at 28 days of age; (b) infants who remained dependent on active respiratory support or increased oxygen at a corrected age of 36 weeks gestation.Results: Between 1987 and 1992 there was a fall in the birth rate, but a significant increase was noted in the number of babies of < or = 32 weeks gestation admitted to a neonatal unit. There was no significant change in survival when the two groups of infants were directly compared. However, mean gestation and birth weight fell. Adjusting for this change showed a significant improvement in survival (28 day survival: odds ratio (OR) = 1.69; 95% confidence interval (95% CI) = 1.23 to 2.33. Survival to 36 week corrected gestation: OR = 1.45; 95% CI = 1.06 to 1.98). These changes were accompanied by a large increase in the incidence of chronic lung disease even after allowing for the change in population characteristics (28 day definition: OR = 2.20; 95% CI = 1.47 to 3.30. 36 week definition: OR = 3.04; 95% CI = 1.91 to 4.83). Between 1992 and 1997 a different pattern emerged. There was a further increase in the number of babies admitted for neonatal care at Conclusions: Current high rates of chronic lung disease are the result of policies to offer neonatal intensive care more widely to the most immature infants. Recent improvements in survival have been achieved without further increases in the risk of infants developing chronic lung disease. [ABSTRACT FROM AUTHOR]

Objective: To investigate SARS-CoV-2 vaccine uptake and effectiveness in children and young people (CYP) with life-limiting neurodisability., Design: We undertook a retrospective cohort study using national hospital data in England from 21 December 2020 to 2 September 2022 to describe SARS-CoV-2 vaccination uptake, and then examined COVID-19 hospitalisation, paediatric intensive care unit (PICU) admission and death following SARS-CoV-2 infection by vaccination status using Cox regression models., Patients: CYP aged 5-17 with life-limiting neurodisability., Results: We identified 38 067 CYP with life-limiting neurodisability; 13 311 (35.0%) received at least one SARS-CoV-2 vaccine, with uptake higher among older, white CYP, from less deprived neighbourhoods. Of 8134 CYP followed up after a positive SARS-CoV-2 test, 1547 (19%) were vaccinated. Within 28 days of infection, 309 (4.7%) unvaccinated CYP were hospitalised with COVID-19 compared with 75 (4.8%) vaccinated CYP. 46 (0.7%) unvaccinated CYP were admitted to PICU compared with 10 (0.6%) vaccinated CYP. 20 CYP died within 28 days of SARS-CoV-2 infection, of which 13 were unvaccinated. Overall, adjusted hazard of hospitalisation for COVID-19 or admission to PICU did not vary by vaccination status. When the Alpha-Delta SARS-CoV-2 variants were dominant, hazard of hospitalisation with COVID-19 was significantly lower among vaccinated CYP (HR 0.26 (0.09 to 0.74)), with no difference seen during Omicron (HR 1.16 (0.74 to 1.81))., Conclusions: SARS-CoV-2 vaccination was protective of COVID-19 hospitalisation among CYP with life-limiting neurodisability during Alpha-Delta, but not for other SARS-CoV-2 variants. Vaccine uptake was low and varied by ethnicity and deprivation., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: This study aimed to investigate the health-related quality of life (HRQoL) at 5 years of age of European children born very preterm across multi-dimensional outcomes by presence and severity of congenital anomalies., Methods: The study used data from a European cohort of children born very preterm (<32 weeks of gestation) and followed up to 5 years of age (N = 3493). Multilevel Ordinary Least Squares (OLS) regression were used to explore the associations between the presence and severity of congenital anomalies., Results: The mean total PedsQL™ GCS score for children with a mild congenital anomaly was lower than the respective value for children without a congenital anomaly by 3.7 points (p < 0.05), controlling for socioeconomic variables only; this effect was attenuated when accumulatively adjusting for perinatal characteristics (3.3 points (p < 0.05)) and neonatal morbidities (3.1 (p < 0.05)). The mean total PedsQL™ GCS scores for children who had a severe congenital anomaly were lower by 7.1 points (p < 0.001), 6.6 points (p < 0.001) and 6.0 points (p < 0.001) when accumulatively adjusting for socioeconomic, perinatal and neonatal variables, respectively., Conclusion: This study revealed that the presence and severity of congenital anomalies are significant predictors of HRQoL outcomes in children born very preterm., Impact: Children born very preterm with congenital anomalies experience poorer health-related quality of life (HRQoL) than their very preterm counterparts born without congenital anomalies. Increased severity of these anomalies compounds the negative impacts on HRQoL. Our findings can be used by stakeholders for clinical and planning purposes., (© 2024. The Author(s).)

Objective: This study aimed to identify the prevalence of psychiatric disorders in 2 population-based cohorts of children born extremely preterm (EP) 11 years apart to ascertain whether psychiatric outcomes have changed over time following improved survival of EP children., Method: In the EPICure2 study, 200 children born EP (22-26 weeks' gestation) in England in 2006 were assessed at 11 years of age alongside 143 term-born children. Children were assessed using the Developmental and Wellbeing Assessment (DAWBA). DSM-IV diagnoses were assigned by clinical psychiatrists for 145 EP and 98 term-born children. Outcomes were compared between a subsample of children from the EPICure2 cohort (2006, n = 76) and the earlier-born EPICure (1995, n = 161) cohort born at 22 to 25 weeks' gestation in England., Results: EP children in EPICure2 were significantly more likely than term-born children to have any psychiatric disorder (39.3% vs 3.1%; adjusted odds ratio [OR] = 15.1, 95% CI = 4.4-51.1), emotional disorders (14.6% vs 2.0%; OR = 7.3, 95% CI = 1.6-32.7), conduct disorders (6.3% vs 0.0%, p = .01), attention-deficit/hyperactivity disorder (ADHD, 21.9% vs 2.6%; OR = 7.2; 95% CI = 1.5-33.6), and autism spectrum disorder (ASD, 18.9%; vs 0.0%, p < .001). There was no significant difference in the rates of any psychiatric disorder between EP children in the EPICure2 and EPICure cohorts., Conclusion: EP children remain at increased risk for psychiatric disorders at 11 years of age compared with term-born peers. Increased survival has not translated into improved psychiatric outcomes. Health care professionals need to be aware of this ongoing risk when caring for children born preterm., (© 2024 The Authors.)

Background: Preterm birth (before 37 completed weeks of gestation) is associated with an increased risk of adverse health and developmental outcomes relative to birth at term. Existing guidelines for data collection in cohort studies of individuals born preterm are either limited in scope, have not been developed using formal consensus methodology, or did not involve a range of stakeholders in their development. Recommendations meeting these criteria would facilitate data pooling and harmonisation across studies., Objectives: To develop a Core Dataset for use in longitudinal cohort studies of individuals born preterm., Methods: This work was carried out as part of the RECAP Preterm project. A systematic review of variables included in existing core outcome sets was combined with a scoping exercise conducted with experts on preterm birth. The results were used to generate a draft core dataset. A modified Delphi process was implemented using two stages with three rounds each. Three stakeholder groups participated: RECAP Preterm project partners; external experts in the field; people with lived experience of preterm birth. The Delphi used a 9-point Likert scale. Higher values indicated greater importance for inclusion. Participants also suggested additional variables they considered important for inclusion which were voted on in later rounds., Results: An initial list of 140 data items was generated. Ninety-six participants across 22 countries participated in the Delphi, of which 29% were individuals with lived experience of preterm birth. Consensus was reached on 160 data items covering Antenatal and Birth Information, Neonatal Care, Mortality, Administrative Information, Organisational Level Information, Socio-economic and Demographic information, Physical Health, Education and Learning, Neurodevelopmental Outcomes, Social, Lifestyle and Leisure, Healthcare Utilisation and Quality of Life., Conclusions: This core dataset includes 160 data items covering antenatal care through outcomes in adulthood. Its use will guide data collection in new studies and facilitate pooling and harmonisation of existing data internationally., (© 2024 The Author(s). Paediatric and Perinatal Epidemiology published by John Wiley & Sons Ltd.)

Background: Children born extremely preterm (EP) are at increased risk of neurocognitive and behavioural morbidity. Here, we investigate whether behavioural outcomes have changed over time concomitant with increasing survival following EP birth., Methods: Comparison of outcomes at 11 years of age for two prospective national cohorts of children born EP in 1995 (EPICure) and 2006 (EPICure2), assessed alongside term-born children. Behavioural outcomes were assessed using the parent-completed Strengths and Difficulties Questionnaire (SDQ), DuPaul Attention-Deficit/Hyperactivity Disorder Rating Scale (ADHD-RS), and Social Communication Questionnaire (SCQ)., Results: In EPICure, 176 EP and 153 term-born children were assessed (mean age: 10.9 years); in EPICure2, 112 EP and 143 term-born children were assessed (mean age: 11.8 years). In both cohorts, EP children had higher mean scores and more clinically significant difficulties than term-born children on almost all measures. Comparing outcomes for EP children in the two cohorts, there were no significant differences in mean scores or in the proportion of children with clinically significant difficulties after adjustment for confounders. Using term-born children as reference, EP children in EPICure2 had significantly higher SDQ total difficulties and ADHD-RS hyperactivity impulsivity z-scores than EP children in EPICure., Conclusions: Behavioural outcomes have not improved for EP children born in 2006 compared with those born in 1995. Relative to term-born peers, EP children born in 2006 had worse outcomes than those born in 1995. There is an ongoing need for long-term clinical follow-up and psychological support for children born EP., (© 2023. The Author(s).)

Objective: Neonatal infection with wildtype SARS-CoV-2 is rare and good outcomes predominate. We investigated neonatal outcomes using national population-level data to describe the impact of different SARS-CoV-2 variants., Design: Prospective population-based cohort study., Setting: Neonatal, paediatric and paediatric intensive care inpatient care settings in the UK., Patients: Neonates (first 28 days after birth) with confirmed SARS-CoV-2 infection who received inpatient care, March 2020 to April 2022. Neonates were identified through active national surveillance with linkage to national SARS-CoV-2 testing data, routinely recorded neonatal data, paediatric intensive care data and obstetric and perinatal mortality surveillance data., Outcomes: Presenting signs, clinical course, severe disease requiring respiratory support are presented by the dominant SARS-CoV-2 variant in circulation at the time., Results: 344 neonates with SARS-CoV-2 infection received inpatient care; breakdown by dominant variant: 146 wildtype, 123 alpha, 57 delta and 18 omicron. Overall, 44.7% (153/342) neonates required respiratory support; short-term outcomes were good with 93.6% (322/344) of neonates discharged home. Eleven neonates died: seven unrelated to SARS-CoV-2 infection, four were attributed to neonatal SARS-CoV-2 infection (case fatality 4/344, 1.2% 95% CI 0.3% to 3.0%) of which three were born preterm due to maternal COVID-19. More neonates were born very preterm (23/54) and required invasive ventilation (27/57) when delta variant was predominant, and all four SARS-CoV-2-related deaths occurred in this period., Conclusions: Inpatient care for neonates with SARS-CoV-2 was uncommon. Although rare, severe neonatal illness was more common during the delta variant period, potentially reflecting more severe maternal disease and associated preterm birth., Trial Registration Number: ISRCTN60033461., Competing Interests: Competing interests: MK, MAQ, CG and JJK received grants from the UK NIHR Policy Research Programme in relation to the submitted work. KEF, AM, MH, AP, SNL, ESD, DS, CD and HM declare no competing interests., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

Many human teratogens are associated with a spectrum of congenital anomalies rather than a single defect, and therefore the identification of congenital anomalies occurring together more frequently than expected may improve the detection of teratogens. Thirty-two EUROCAT congenital anomaly registries covering 6,599,765 births provided 123,566 cases with one or more major congenital anomalies (excluding chromosomal and genetic syndromes) for the birth years 2008-2016. The EUROCAT multiple congenital anomaly algorithm identified 8804 cases with two or more major congenital anomalies in different organ systems, that were not recognized as part of a syndrome or sequence. For each pair of anomalies, the odds of a case having both anomalies relative to having only one anomaly was calculated and the p value was estimated using a two-sided Fisher's exact test. The Benjamini-Hochberg procedure adjusted p values to control the false discovery rate and pairs of anomalies with adjusted p values < 0.05 were identified. A total of 1386 combinations of two anomalies were analyzed. Out of the 31 statistically significant positive associations identified, 20 were found to be known associations or sequences already described in the literature and 11 were considered "potential new associations" by the EUROCAT Coding and Classification Committee. After a review of the literature and a detailed examination of the individual cases with the anomaly pairs, six pairs remained classified as new associations. In summary, systematically searching for congenital anomalies occurring together more frequently than expected using the EUROCAT database is worthwhile and has identified six new associations that merit further investigation., (© 2023. The Author(s).)

Background: Children born very preterm (<32 weeks of gestation) face high risks of neurodevelopmental and health difficulties compared with children born at term. Follow-up after discharge from the neonatal intensive care unit is essential to ensure early detection and intervention, but data on policy approaches are sparse., Methods: We investigated the characteristics of follow-up policy and programmes in 11 European countries from 2011 to 2022 using healthcare informant questionnaires and the published/grey literature. We further explored how one aspect of follow-up, its recommended duration, may be reflected in the percent of parents reporting that their children are receiving follow-up services at 5 years of age in these countries using data from an area-based cohort of very preterm births in 2011/12 (N = 3635)., Results: Between 2011/12 and 22, the number of countries with follow-up policies or programmes increased from 6 to 11. The policies and programmes were heterogeneous in eligibility criteria, duration and content. In countries that recommended longer follow-up, parent-reported follow-up rates at 5 years of age were higher, especially among the highest risk children, born <28 weeks' gestation or with birthweight <1000 g: between 42.1% and 70.1%, vs. <20% in most countries without recommendations., Conclusions: Large variations exist in follow-up policies and programmes for children born very preterm in Europe; differences in recommended duration translate into cross-country disparities in reported follow-up at 5 years of age., (© The Author(s) 2023. Published by Oxford University Press on behalf of the European Public Health Association.)

Objectives: To determine the baseline trends in the total birth prevalence of neural tube defects (NTDs) in England (2000-2019) to enable the impact of folic acid fortification of non-wholemeal wheat flour to be monitored., Design: Population-based, observational study using congenital anomaly (CA) registration data for England curated by the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)., Setting: Regions of England with active registration in the time period., Participants: Babies that were liveborn or stillborn and pregnancies that resulted in a termination of pregnancy or a late miscarriage (20-23 weeks' gestation) with an NTD., Main Outcome Measures: Total birth prevalence of anencephaly, spina bifida and all NTDs in England. Poisson regression analysis was used to evaluate time trends with regional register as a random effect. The progress of national registration across England was assessed., Results: There were 4541 NTD pregnancies out of 3 637 842 births in England; 1982 anencephaly and 2127 spina bifida. NTD prevalence was 12.5 (95% CI 12.1 to 12.9) per 10 000 total births. NTD prevalence per 10 000 total births was significantly higher in 2015-2019 (13.6, 95% CI 12.9 to 14.4) compared with 2010-2014 (12.1, 95% CI 11.7 to 12.5). An increasing trend in NTDs overall was detected (incidence rate ratio (IRR) 1.01, 1.00 to 1.02), although further analysis determined this effect was confined to 2015-2019 (compared against 2000-2004, IRR 1.14, 1.04 to 1.24). The birth prevalence of anencephaly reflected this pattern. The prevalence of spina bifida remained relatively stable over time., Conclusions: Baseline NTD prevalence for England has been established. National and standardised CA registration is in place, facilitating the systematic and consistent monitoring of pre-fortification and post-fortification NTD trends and evaluating the impact of fortification on NTD prevalence., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Children experiencing critical illness or injury may require admission to a paediatric intensive care unit (PICU) to receive life-sustaining or life-saving treatment. Studies have explored the experience of parents with a child in PICU but tend to focus on subgroups of children or specific healthcare systems. Therefore, we aimed to undertake a meta-ethnography to draw together the published research., Methods: A systematic search strategy was developed to identify qualitative studies, which had explored the experiences of parents with a critically ill child treated in a PICU. A meta-ethnography was undertaken following the structured steps of identifying the topic; undertaking a systematic search; reading the research; determining how the studies relate and translate into each other; and synthesising and expressing the results., Results: We identified 2989 articles from our search and after a systematic series of exclusions, 15 papers remaining for inclusion. We explored the original parent voices (first order) and the interpretation of the study authors (second order) to identify three third-order concepts (our interpretation of the findings), which related to technical, relational and temporal factors. These factors influenced parents' experiences, providing both barriers and facilitators to how parents and caregivers experienced the time their child was in the PICU. The dynamic and co-constructed nature of safety provided an analytical overarching frame of reference., Conclusion: This synthesis demonstrates novel ways in which parents and caregivers can contribute to the vital role of ensuring a co-created safe healthcare environment for their child when receiving life-saving care within the PICU., (© 2023 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Objective: Currently used estimates of survival are nearly 10 years old and relate to only those babies admitted for neonatal care. Due to ongoing improvements in neonatal care, here we update estimates of survival for singleton and multiple births at 22 +0 to 31 +6 weeks gestational age across the perinatal care pathway by gestational age and birth weight., Design: Retrospective analysis of routinely collected data., Setting: A national cohort from the UK and British Crown Dependencies., Patients: Babies born at 22 +0 to 31 +6 weeks gestational age from 1 January 2016 to 31 December 2020., Interventions: None., Main Outcome Measures: Survival to 28 days., Results: Estimates of neonatal survival are provided for babies: (1) alive at the onset of care during the birthing process (n=43 763); (2) babies where survival-focused care was initiated (n=42 004); and (3) babies admitted for neonatal care (n=41 158). We have produced easy-to-use survival charts for singleton and multiple births. Generally, survival increased with increasing gestational age at birth and with increasing birth weight. For all births with a birthweight over 1000 g, survival was 90% or higher at all three stages of care., Conclusions: Survival estimates are a vital tool to support and supplement clinical judgement within perinatal care. These up-to-date, national estimates of survival to 28 days are provided based on three stages of the perinatal care pathway to support ongoing clinical care. These novel results are a key resource for policy and practice including counselling parents and informing care provision., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Importance: The Apgar score is used worldwide as an assessment tool to estimate the vitality of newborns in their first minutes of life. Its applicability to estimate neurodevelopmental outcomes in infants born extremely preterm (EPT; <28 weeks' gestation) is not well established., Objective: To investigate the association between the Apgar score and neurodevelopmental outcomes in infants born EPT., Design, Setting, and Participants: This cohort study was conducted using data from the Effective Perinatal Intensive Care in Europe-Screening to Improve Health in Very Preterm Infants in Europe (EPICE-SHIPS) study, a population-based cohort in 19 regions of 11 European countries in 2011 to 2012. Clinical assessments of cognition and motor function at age 5 years were performed in infants born EPT and analyzed in January to July 2023., Exposures: Apgar score at 5 minutes of life categorized into 4 groups (0-3, 4-6, 7-8, and 9-10 points)., Main Outcomes and Measures: Cognitive and motor outcomes were assessed using the Wechsler Preschool and Primary Scale of Intelligence test of IQ derived from locally normed versions by country and the Movement Assessment Battery for Children-Second Edition. Parents additionally provided information on communication and problem-solving skills using the Ages and Stages Questionnaire, third edition (ASQ-3). All outcomes were measured as continuous variables., Results: From the total cohort of 4395 infants born EPT, 2522 infants were live born, 1654 infants survived to age 5 years, and 996 infants (478 females [48.0%]) followed up had at least 1 of 3 outcome measures. After adjusting for sociodemographic variables, perinatal factors, and severe neonatal morbidities, there was no association of Apgar score with IQ, even for scores of 3 or less (β = -3.3; 95% CI, -10.5 to 3.8) compared with the score 9 to 10 category. Similarly, no association was found for ASQ-3 (β = -2.1; 95% CI, -24.6 to 20.4). Congruent results for Apgar scores of 3 or less were obtained for motor function scores for all children (β = -4.0; 95% CI, -20.1 to 12.1) and excluding children with a diagnosis of cerebral palsy (β = 0.8, 95% CI -11.7 to 13.3)., Conclusions and Relevance: This study found that low Apgar scores were not associated with longer-term outcomes in infants born EPT. This finding may be associated with high interobserver variability in Apgar scoring, reduced vitality signs and poorer responses to resuscitation after birth among infants born EPT, and the association of more deleterious exposures in the neonatal intensive care unit or of socioeconomic factors with greater changes in outcomes during the first 5 years of life.